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Cadaveric organ donation in India caught in bureaucratic bind

Date : August 6, 2013

Implementers of Act have tough questions to answer on Organ Donation Day

Nineteen years ago, when the Transplantation of Human Organs Act was passed, activists rejoiced. They believed it would put an end to the commercial sale of organs, and encourage cadaveric organ donation in the country. In retrospect, neither has organ commerce been done away with nor has cadaveric donation become the norm. Has the TOHO Act then failed the country? On Organ Donation Day, the implementers of the Act have some tough questions to answer.

Police are still busting organ trade rackets across the country, more recently in Dharmapuri. While Maharashtra, Tamil Nadu, Karnataka, Andhra Pradesh and Kerala have evolved their own State-based cadaver donation programmes, some robust, some fledgling, not much progress has been made in the rest of the country. It certainly is not due to a shortage of brain deaths.

“There is a tremendous humanitarian spirit in this country,” says C.E.Karunakaran, trustee, National Network for Organ Sharing (NNOS). “If the family is counselled properly, over three quarters will agree for organ donation of the kin, this is even with people who have not heard of the concept.” He says hospitals are not working to generate the donors and quotes the instance where a hospital was able to generate one donor while it had 48 brain deaths, last year.

“While some people think the problem is in the public realm, that people are not aware, the real issue is with the hospitals,” Sunil Shroff, founder, MOHAN Foundation. “The true perspective is that we have failed to identify, certify and maintain brain death in hospitals. If we are not able to cross that bridge, we cannot progress. And it is possible to do so within the Act. The problem, therefore, is in the implementation of the Act.”

Even in Tamil Nadu that leads the country in terms of number of cadaveric organ donations, three quarters of the donors came from two hospitals in capital city Chennai: Apollo Hospital and Rajiv Gandhi Government General Hospital until a year ago. Only recently has the number of donors from other hospitals outside of Chennai improved, Mr. Karunakaran adds.

“Unfortunately, the entire legal framework [of the Act] is based on total bureaucratic procedures, without an understanding of the root of the problem or how to tackle it,” he says. The documentation required from hospitals applying to start organ donation programme runs into several hundreds of pages and includes qualifications of all health workers likely to be involved in the process. Once this is submitted, a long wait begins for approval.

Setting up a transparent procedure with the Authorisation Committee, will go more than half the way to ensure the regulation is effective, he says. Similarly, procedures vary from State to State, and are so demanding that they frustrate the process of going in for live organ donation, experts point out. It is necessary to iron out and standardise definitions of ‘near relatives’ across the country, and processes too.

In a recent case, a patient who had applied to the Tamil Nadu Authorisation Committee for live, related donation was asked to get a second nativity certificate after the scheduled transplant was deferred for medical reasons. “Why put people who are already in distress through more trouble? How can a nativity status change in the interim period?” a doctor asks. The law, while curbing illegalities, must ensure that it does not become draconian for genuine patients, he says.

The biggest lacuna, however, according to doctors, is the fact that Act has only laid down procedure to donate organs, not who can take the organ. Any donated organ belongs to society. Tamil Nadu has a system in place that makes sure allotments are in turn, and based on certain accepted medical criteria. But that still does not exist in most other States, and this only leads to distrust among hospitals, donors and patients, Dr. Karunakaran says.